Carol Nawina Nyirenda
Carol Nawina Nyirenda is tireless—one day advocating at the World Health Organization, another speaking at an international AIDS conference, yet another building a rural health clinic in her native Zambia. What gives this passionate, articulate activist her energy is that, unlike many of her friends and family, she has survived HIV.
“There must be a reason why I’m still alive,” she says. “I went to rock bottom, but I survived. I want to inspire people by showing them that you can be HIV-positive and still lead a normal, productive life.”
Born in rural Zambia in 1963, Carol was leading a middle-class life with her husband and two children when people around her began dying of a disease not seen before. Soon her world began to collapse. Her husband got sick. They lost their home and then separated. Carol and her daughter moved in with relatives, apart from her husband and son. Months later, she got a phone call telling her that her husband had died; HIV was never mentioned.
In 2001, Carol became ill. She was diag- nosed with Kaposi’s sarcoma, a cancer common in people with HIV. When she began coughing, her brother, a doctor, suspected she had tuberculosis(TB). He urged her to be tested for TBandalso for HIV. “I was highly offended,” she remembers. “I had been a faithful wife and thought I was safe.”
In 2002, Carol received the diagnosis that changed her life. “I felt very angry,” she says. “My husband was gone. I had HIV, cancer, and TB. Why had God done this to us?” The AIDS epidemic hit Zambia hard in the 1980s, but even 20 years later when Carol was diagnosed, HIV was seen as a death sentence: it wasn’t a question of if you would die, only a question of when.
Carol sought treatment in a neighboring town to keep her condition secret, but news of her illness soon leaked out. People stopped coming to her restaurant. She ran out of money for expensive antiretroviral drugs. The hospital providing her chemotherapy told her brother to save his money for her funeral rather than spending it on more treatment. Feeling hopeless, she went home to her mother to die.
Then, in 2003, through George W. Bush’s President’s Emergency Plan for AIDS Relief, the U.S. sent antiretroviral medications to Zambia and Carol was able to access free treatment. “I wanted to survive for my children,” she says. “I dreamt that one day I could start an organization to help others like me.”
Her mother encouraged Carol to join an HIV support group, but Carol hesitated. Then, she says, “I heard about the Global Fund to Fight AIDS, Tuberculosis, and Malaria, and helped write a proposal to fund our patient group.”
Carol has since become an internationally known TB and HIV activist, launching numerous projects to help people recover from what she calls “the Thriller Syndrome.” She explains: “In the Michael Jackson video, people come out of the grave walking around like zombies. That’s what it feels like—when people are diagnosed with HIV, they are alive but not really living. I want to help them wake up and bring them back to full lives.”
In 2008, she founded the Community Initiative for Tuberculosis, HIV/AIDS, and Malaria, a patient-led organization providing Zambians with life-saving information and care. She chairs the Coalition of Zambian Women with HIV. She is president of the Africa Coalition on TB. Her latest endeavor, the Nambwa Project, is creating access to health care, education, and self-sustaining income for a rural community in Zambia heavily affected by HIV. “I bridge the gap,” Carol says. “People are willing, sometimes they just need a little help.”
Carol is indefatigable in her activism, and optimistic about the future. “I refuse to be beaten,” she says. “Life gave me a lemon, but I wanted a banana. So I made lemonade, sold it, and bought the banana I wanted.”